Halaven - Day 1
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Lulu,
My counts, when I am at the hospital, have been remarkably good. My hospital doesn't default to neuprogen. They only offer it to Eribulen patients if the counts are low. I have had some gum issues from the Xgeva which let me know when my counts fall, but since they come back quickly, no bionic device for me! [yet.]
Glad to hear that you have turned the corner!
*susan*
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Hello all. I stopped in to see how everyone is doing. I also need to give a quick update.
From my above post, you can see that Gemzar, on the day of injection (second dose), was hard. We will call it day one. Day two was fine, but I mostly laid around all day, puttering around the house. Day three started O.K., I even ran errands with my husband. Maybe it was the exercise, but I plunged back into the body aches and pains and migraine. Again, I took ibuprofen, the tramadol, then naproxen when the headache would not go away. It took a few hours, but it eventually got better. Next time I will try a preemptive strike and take the meds early. I also have this weird spot on my shin that felt like a bruise, then a rash, then a burn. The oncologist did ask me if I developed a rash yet. It faded over the following days, but I will definitely be telling her about it next appointment. It is one of the Gemzar side effects, so.... The good news is, besides a little tiredness, that is the worst of it. I say that now, but I am also wondering about the cumulative effects. Also, I go back this Monday (my off week) for a blood draw to check my liver enzymes. I am hoping it is the Gemzar and not an angry tumor.
Thank you Southern, Irish, Lulu, Susan, and everyone else on here for thinking of me. This is a nice place to come for support and advice. I am going to ask about the feasibility of a liver biopsy my next appointment. They have never biopsied my liver, but they did biopsy my breast and lymph nodes in 2015. Then took them out later that year.
Hope you all are having a good day. ❤️
--Liz
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Life has not been great around here.
On Thursday, I had a CAT scan. I HATE these scans but they are required for this clinical trial. [PET Scans are my usual.] The barium and contrast play havoc on my body. For 24 hours I am just reamed out. But, the damn port wouldn't work [again!] For the first time they had to put enzymes into the port to coax out some blood. By the time we had blood, my appointment was long gone. Instead of a 90 minute stay at Dana Farber, I was there for four hours.
Friday, at noon, Dr. C called. She said that she had some good news. That I am stable. The bad news? I have a blood clot in my left lung. I don't consider any of this good news. I am stable with smouldering tumors!! I had really hoped that the amount of uptake would have been less "red." The lung clot, though small, is obviously a bad turn. I asked her what could have led to such a clot, and her response was chilling– "This is a side effect of cancer and its treatment." How to treat? Oh, no simple pill by mouth for me. Nope. I have to inject myself TWICE A DAY! At first, she was this isn't urgent, but then she called back several more times and it was clear, I had to head to Dana Farber today to start this treatment.
I waited for the Brazilians to check in [I have a small airBNB,] and for son-in-law to pick up the grand, and then I went, driving through Red Sox traffic. Thank goodness I had my regular nurse who was patient and calm, and told me stories of her recent trip to Greece. I have always said I could never stick anything or anyone with a needle. I am proving this with every passing day."A side effect" of cancer? Seriously? More indignities to endure?
For the first time, I am angry. I will see Dr. C on Tuesday and start to quiz her about how long I will need blood thinning drugs and how we will check the status of the blood clot. My husband is doing the injection because I can still not stick myself even though it is almost painless.
I made some yeasted Blueberry rolls last night as my consolation prize.
*susan*
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Susan,
Welcome to the Clot Club. I have been injecting myself twice daily for almost four months now. I keep hinting/begging/pouting that maybe we should switch to pills, but according to the MO the shots are better at controlling the clotting, and can be "turned off" easier should I need an emergency procedure.
I should train the spouse in the art of injecting, but I was a farm girl and am much more confident with a needle than he is. I am blessed (?) to have plenty of fat on my stomach, so the shots are a breeze.
You are lucky that the clot was picked up with imaging, and not by creating havoc. I know you don't feel lucky, because 1) clot and 2) needles, but my stupid clot kept me from breathing well for far too long before it showed itself.
Congrats on being stable! I hate the full contrast scans too - barium is not my buddy.
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Susan, I'm so sorry you've had a rough week. Barium and iodine ream me out, too, and I just have to stay home until it... passes. I had CTs every 8 weeks when I was on study with Taxol. The radiology guys explained to me that the barium works by coating everything in its path so it is kind of like a bulldozer in the gut; whatever is in there already, it will push it forward with force. So I've learned to clear the runway a bit before the barium lands-- I cut back on gas-forming foods and try to clear my GI tract the day before. That does help.
I've had my port for 5.5 years, and one time a couple of years ago it wouldn't give blood return and I had to have enzymes. It's worked fine every time since then (it's accessed at least once a week). I hope that will encourage you that this might be a one-time thing. Maybe the same conditions that enabled the clot to form also contributed to the clogged port? Thicker blood, maybe.
I don't know why I have never had to do those shots but I am glad I've missed that ring in this circus, so far anyway. Because of my MTHFR mutation, I've had a ton of clots throughout my life though never in my lungs. That is a bother, for sure. I'm sorry you have to mess with that. Did they tell you to take baby aspirin?
I've had a wretched week following Halaven #2 with Neulasta. Good heavens. You said the first round made you question your will to live and I am just about THERE. This *has* to get better. I've had a headache from hades for six days and I still feel like I have the flu. And golly, I have SO much to do and it's all just piling higher while I slog around. If I take a pain med that even fazes the aches and pains, I get sleepy and cannot be productive. I am very frustrated right now.
Here's to a better week ahead. Are you off next week?
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Jennifer, I actually understand [intellectually] that I am very lucky that my clot was found via scan. Since I am being scanned so regularly with this clinical trial, we know that this small clot didn't exist 12 weeks ago. Useful knowledge, I would think. While talking with Dr. C, she used many of the same logical explanations regarding "no pills." She also added that this injectable drug is the only one which has been tested with good results in "our population." She also mentioned that warfarin requires that you eat exactly the same nutritional content each day and that this is not easy for "our population." Cancer patients, the logic goes, have too many outside influences on their taste buds and energy levels to eat the exact same amount of vitamins, especially Vitamin K, each and every day. This injectable drug, since it is dosed by weight, is more accurate. As to the needles, I am one tough woman except for this one thing. Mr. 02143 isn't doing a great job, but at least he is doing it. Oh, and I am so sorry that you are having to do these injections as well.
Lulu, if you are anything like me, cycle 2 will be easier. My port has never been right. It has failed to give blood five times, though the first four times we did all kind of weird positioning and simply waiting, and it did finally give the goods. Three times, the port was so inflamed that no one would access it. The Taxol burned, and the port pain would last most of the week, hurting me and causing enough itching to wake me in the middle of the night. I am just about done with my week off. But you must be starting yours?
I am so glad to hear that the barium/contrast combination makes other feels nasty. At least it is normal.
*susan*
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Hello! I have joined the Halevanites having my first infusion last Wednesday. Holy Hell. I have been reading through this thread to see if I could expect this to get any better with time.
That was quite a first week. I had my infusion on Wednesday. Had decadron and zofran premeds. I got home and felt really good all night...until I tried to sleep (I hate dex). I struggled all night to get some sleep but it came in bits and pieces. I had to go for a Nupogen shot 24 hours after the infusion and this is where the hell began. Within an hour of the shot, I had a headache unlike any headache I have ever had in my life. I am not being dramatic - it was awful. It felt like someone had a vice grip on my head just squeezing away. Hydrocodone didn't take it away, Ibuprofen didn't take it away. I wrapped my head in icepacks and was able to get a little sleep, but again...bits and pieces at a time. I felt so tired and I couldn't sleep. Ugh, frustrating. Day three - more of the same. Again, I had to have a nupogen shot. My head was hurting so bad when I got there, we decided to try some fluids. That helped a little but the headache persisted. Day Four was a bit better, no longer vice grip pain, but still headache and now enter nausea. I did my best to try to enjoy a bit of the day - had some friends over to watch football, but I ended up going to bed and letting my husband entertain, lol. Day five (sunday) I set an alarm as I really wanted/needed to go to church. I felt pretty good - headache had eased up quite a bit and no real nausea to speak of - just so tired!!! I made it to church but that was the extent of anything productive yesterday. Today - Day 6 - FINALLY woke up energized and with no headache or nausea. This stuff doesn't mess around - five days down for the count on the first infusion.... Wow - does it get it better or is this what I need to expect?
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Apparently I have developed Keytruda induced nephritis, an acute kidney injury. Apparently it is a drug induced autoimmune thing....so I guess I was responding to the immunotherapy! Keytruda and eribulin are being held and I'm on high dose steriods to reverse kidney damage. I think they caught it fairly early and am hopeful that things can be restarted while closely monitored, but looks like it would take up to 12 weeks for that to happen, if at all. Since I had such a good response from drugs I don't want to completely give up. I have an apt tomorrow to check labs.
Will cross post.
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Golly, Mustang, I hear ya. I had that headache with injection #1. Then I went home from injection #2 with a Neulasta pod attached to my belly. The headache resumed and was even more persistent. I tried naproxen, ibuprofen, Vicoprofen, essential oils, coconut milk, naps... nothing completely stopped it. I think next time I will go back to the chemo lab for another bag of fluids the day after the injection.
I hope your second injection is better, but I hate to tell you-- my week 2 has been worse. I've had a wave of sadness and stinky thinking with both injections. I seriously need that to S.T.O.P. It was pretty bad yesterday. Today is Day 15 and I feel a little better, although I am still weak and wobbly.
Try to decline the dexamethadeath! That stuff just about did me in when I was on Taxol. I finally just refused to receive it anymore after about a year, and the angels sang and I got some big parts of my life back. I am not getting it with Halaven, either.
Hopefully some who have been on this combo longer than I have will weigh in.
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KPW3, that sounds awful! I am so sorry. Please keep us posted!
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Mustang, this sounds like a total nightmare! I get a headache within moments of the push, but it remains a low grade headache. Vice grips? This sounds so painful. I am so sorry that you are having such a rough time. Has anyone considered a lower dose to make this treatment more possible for your mental health? As lulu says, my first cycle was the hardest, but, you are experiencing a different plane of horror. I wouldn't tolerate this from a "do I want to live enough to get this treatment" point of view. I hope that you can have an honest discussion with your oncologist and that they are willing to do whatever it takes. And, yes, get rid of that steroid! I don't get any pre-meds at all, and they are not given at my hospital unless the side effects of the drugs require them.
KPW, I googled nephritis and this is some scary stuff! I guess your immune system was sent into over-drive. Is there any treatment in addition to the steroids? How are you feeling?
*susan*
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Today began cycle 4. White blood counts are a tad low; certainly low for me, but onward. Most of my doctor visit was talking about blood thinners. 6-12 MONTHS.... maybe indefinitely!!!!! My new life is one of a pin cushion. Then we reviewed my eribulin side effects. The level of neuropathy is now grade 2 and they have, indeed reduced my dose. The research nurse was a bit snotty "this is very early for a reduction" but she isn't living in my body. I am very comfortable with this dose. I know at my old hospital that my low dose is their starting dose.
The actual push was quick and easy. The minute that first drop hit my system, the headache was back. Thank goodness I can control it with Advil. However, my feet and fingers are not responding as quickly as the last treatment which is great.
*susan*
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Susan, did you ice this time?
The headache: yes. I'll be tossing back two Advil an hour before my next injection, and every four hours after, anon and amen. They should give us biggie-sized ibuprofen shots in our ports, if you ask me. And tequila maybe.
I am not missing my former research nurse. Anyone who grimaces when a stage IV cancer patient announces they are taking a week off to go to the beach is probably overdue for a karmic adjustment. Buh-bye.
ps. My pathetic tufts of taxol fluff are already falling out. That only took, what, 15 days?! Probably time for a fuzz buzz.
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Lulu, No. I didn't ice. I can't find anyone at my hospital that thinks icing helps so no support system exists for this. [They do have cold caps for people who are willing to pay BIG for them. I have to say, I find the moans of pain from those patients disconcerting and would prefer not to hear them.] Last night, my feet tingled a bit, but nothing like cycle 3 where I went numb within 3 hours of the infusion. My fingertips are not screaming in pain as I type this which was also the case during cycle 3. Sorry about the Taxol fluff. Mine has simply remained on my head. In fact, it is time to ask my daughter to trim it up again. I ate too much at dinner last night [husband insisted on eating out] and had to take a Zantac. Probably worth not loosing another pound.
For those that are interested, full dose was 1.4 mlg/M2 [squared]. I am now getting 1.1 mlg/M2 [squared.]
*susan*
p.s. yes vote on the tequila!
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Susan, I own my gel mitts and socks for icing; I learned early on not to rely on the cancer center for that because even though TX Onc supports icing, they only keep one set of mitts and socks on hand (and besides, ewww). I bought Elastogels from Amazon. I hate the things but they do help. My nurses won’t even administer until they see I have had the gels on for at least10 minutes.
Interesting contrast—I see several patients wearing Elastogels at my clinic but in all these years I’ve yet to see one person there doing cold caps. And this is a huge chemo center, like 40 recliners and several rooms with private beds, usually at full capacity. Weird how different things are from one center to another.
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There is hope. Hope has been in short supply lately.
Day 2. I woke at 7:30. I spent the morning ironing the AirBNB sheets, oh right, after being injected. I turned over the AirBNB rooms. I made lunch. I drank more coffee. Finished the rooms. Stocked their breakfast. Took a 15 minute doze. Greeted new guests. Helped them determine where to get allergy drugs and dinner. Made our dinner. Roasted some chicken for tomorrow's lunch. My feet? No worse than they were before yesterday's infusion. Hands, same with one outlier spot. Oh, there was organizing my first floor so it was ready for new folks to arrive. Sorted the grandchild's stock of clothing, putting the too small into a box for storage. I only dropped one thing, a piece of foil. I washed my hands several times after touching raw chicken and i didn't feel like I was getting second degree burns.
Not bad. Of course, Day 5 will be the true test of this reduced dose.
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p.s. And I didn't need to take an Advil for the headache until 3:22PM!!!!
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Oh golly, Susan. Poetry to my discouraged soul. I might carefully copy your words with my best fountain pen and affix them to the cover of my dusty planner. Set them to music and sing them in the shower, hopefully loud enough for the cancer gods to fear me again.
And then I will have to take another nap.
You accomplished more yesterday than I have managed in the last three weeks. My big girl panties fell off with the Neulasta shot on Day 9 and I am still struggling to just get up and get dressed here on Day 18.
But maybe there is hope. Thanks for reporting in, comrade. Onward
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I have been intending to post earlier, but with the high dose steroids are making me a bit jittery and with the neuropathy in my fingers it has become more difficult to type....I hope it doesn't stay like this. I'm feeling much better. My headache is gone, cough gone, I have some energy back (not like Susan! wow). They are now attributing the thyroid (or now non-funtioning thyroid) to my immune system attacking it. The synthroid they started me on seems to be starting to kick in. Kidneys are looking better, I have an apt with nephrologist tomorrow. Keytruda and Halaven are being held....don't know it I will be able to take Keytruda again, but they are keeping me on the trial and tentative plan to start Halaven when kidney functions are normal. Apparently I'm one of the 1% that has this kind of reaction....leave it to me.
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KPW, being a 1%-er in this context is not what one hopes for. I am a 1%-er for progression to metastastic disease. Not an honor I wanted either! The thyroid is one of the many body parts that I no longer have. Ride them hard about the amount of Synthroid they are willing to give you. For whatever reason, they hold back the amount to the minimum. As my oncologist said "Why? It is like giving candy to a child. Always appreciated and improves quality of life." This year I successfully pleaded my case after I had lost a bunch of weight to keep my dosage the same. Such a difference!
Glad to hear that overall you are on the mend. There are days when up is the only place we can go.
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Hail, fellow 1%-ers, meet the 0%-er. Yep. Me. I am that gal who got the ZERO on the Oncotype. No joke. Z.E.R.O. "Lowest score in history!", they all said.
Three years later, Stage IV.
To be fair, they tested my ductal tumors, and it was the lobular that recurred. But still. Lucky, lucky, lucky me.
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Mustang, how are you doing? Did you have your second Halaven yesterday? Did they give you Neulasta?
Hang in there and let us hear from you.
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Back in the day we didn't get no stinking ONCO. That test became common after my initial diagnosis, so I was given a "less than 1%> chance based on the standard grade, size, lymph, etc. So, it is interesting that we both such low probabilities and are still here 8 years after progressing?
EDITED To Ensure that everyone knows I am being firmly tongue in cheek: And I walked to chemo, barefoot, through rain and snow, uphill both ways since my horse was not feeling well either.
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I didn't get the ONCO test either! Back in the old days, you got chemo after surgery, and no one offered me a port for chemotherapy.
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I can live with this. Another good day yesterday. I was careful, however, not to overdo since I know that my "bad" days are coming. I made lunch. A lovely chicken salad with homemade rolls [from the magic freezer.] In the morning, I made some tart dough, later I rolled, chilled, and then made a French tomato-mustard tart for dinner served with a green salad. Just as recently as 5 months ago, this amount of activity would have been of no note. Now? I feel like I had a day that resembled normal life. https://cooking.nytimes.com/recipes/1015578-gerard..., I cooked from the book and did the tomato version.
First Advil was at 10:38AM. I took a nap. It wasn't a "I can't move and must collapse nap" though. It was a I am a bit tired and would like to nap. very different.
This morning, my counts are clearly starting to go down. I will be tired today, but I always am on Friday since I get about 90 minutes less sleep so that I am up and ready for the grand kid to arrive at 7:30. Now that she is nap-advert, husband and I have to trade off nap times; each trying to catch about 20 minutes.
In fact, I should go downstairs to prepare for her arrival.
*susan*
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Susan, you say 5 months ago this amount of activity wouldn’t have been possible. Can I ask what changed? I am in a terrible place of having so much pain that I literally do nothing every dayexcept lay down (which eases the pain) or sit in the recliner with a heating pad. Without the heating pad, sitting isn’t an option.
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For those experiencing pain after a neulasta shot, or just pain in general. My clinic prescribes Claritin. I know it sounds strange, but it works! I took Claritin the day before my neulasta shot, and then every day for nine days after the shot. Only experienced low level aches. One time, I stopped the Claritin early, after four days. Late on day five I experienced the worst pain in my bones and head. Nothing would touch it until I took half of a oxycotin. Went back on the Claritin from then on. Worked great.
That was a couple of years ago. Now I am on a different chemo - no neulasta shot, but my liver is not happy with ibuprofen, naproxen, Tylenol, or most other pain meds. My oncologist recommends tramadol with Claritin. I am just now trying this today (first dose of round two - Gemzar), but I expect that it will be effective. Please give it a try. Bone pain and migraines are the worst. I hopes it helps.
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Sheila,
I will try to answer your question "Can I ask what changed?" but it turns out that this simple question is hard to answer.
First off, my problem has never been pain. I have not had any pain from my tumors since the breast tumor was removed in 2005. Oh, I have some neuropathic pain, but that has only made some walking, like from the edge of a parking lot to a store, problematic. During my 5 years of Faslodex, my butt hurt. My stomach is starting to rebel from all these Lovonox shots. But, I do not have what I would call chronic or cancer pain. Yes, I know that I am very lucky.
This winter was a hard one. Some things in my personal life got squirrely just as the toxicity of Taxol was beginning to take a toll. We changed my protocol for the Taxol to full strength, but with a 3 week on, 2 week off schedule. But those squirrely things emptied my energy and emotional reserves, and I simply could.not.do.anything. I was not tired and yet I was exhausted. I had no energy or perhaps motivation to accomplish. I hit the "wall" several times a day; a wall that made my brain stop working, much less my body. And then I had a progression. And then the Eribulin which simply did me in. I had a few days during those first 12 weeks of Eribulin that I could do anything, but for me, this wasn't enough. It took me 3 weeks to make a dress for the grand kid; a pattern that should take me about 5 hours normally.
With nothing in reserve, I was paralyzed.
The current dose reduction gives me some hope. My brain isn't shutting down. I am actually able to create a to-do list in the morning and accomplish at least some of the items on this list. Not always all, though my lists are really too long. I have had the energy to leave the house and go to the supermarket. I can think enough to actually write emails to friends and try to connect with people again.
I realize that with each treatment I will have less stamina. But, being a total slug just isn't what I wish for myself. This dose reduction has lifted me to at least snail or maybe tortoise. I am functioning even if my daily goals are more limited than they once were.
Does that begin to answer your question?
*susan*
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I promised myself that I would complete my week in review here, and have fallen behind.
Day 4, Friday, should be the worst day of the week. I can't say this categorically since every day until Day 19 were just terrible in the previous cycles. It wasn't so bad! No Advil until 1:30, made lunch and dinner, did a Costco run, watched the 2 yr old grandchild for a 9 hour day [though Mr. 02143 did a lot of the heavy lifting.] I did three loads of laundry. I took a doze, could have used some real sleep, while the kid did a "pretend" nap on my office rug. At the end of the day, I did feel that I had over-done and anticipated paying the price on Saturday.
Day 5. Saturday, was again, just fine. I was dragging just a bit and did take an hour long nap. More laundry. Lunch. And then I started to make some Leek-Potato soup which always takes too long with all the washing of the leeks. While I was prepping the vegetables I learned that my kid, kid-in-law, and grand were right down the street, so invited them to dinner. By the time they left I was exhausted. At some point, perhaps, I had twisted my back [?], anyhow, my upper let buttock is in some pain.
Day 6: Sunday. This was all for me. Our guests checked out at 5AM and I had the entire day to myself. I pulled out an old sewing project, a winter shirt with buttons for port access and got to work. I did strip the beds, and grab the towels from the guest rooms, but only washed the towels.
Day 7; Monday. I awoke to discover that my rooms were booked for today! So much of today involved getting the rooms ready while amusing that same 2-year old.
Sitting at the hospital, doing almost nothing, might be a day off for me! I can not begin to describe how much better this reduction in dose has made me feel. This is a life that is worth living. I am a bit concerned about the odd muscle pain and the big and small muscle cramping that I have been experiencing this week. Odd sensations, and painful. My potassium levels are healthy so I am unsure about my plan. I will ask the team tomorrow iff this is a side effect of either Eribulin or the Lovonox.
Tomorrow I will get up before the sun and let them do this to me once again.
*susan*
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p.s. Neuropathy hasn't improved, but it hasn't gotten particularly worse. I now have a bit of a "dropped" foot, left side, and have to be careful to actually lift it when I am tired.
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